Izzi's "Storey"

Posted on June 09 2015

Isabelle began having GI issues a few days after Christmas 2010. She was hospitalized. We celebrated New Years 2011 on the St. Lukes pediatric unit, where they diagnosed her with an infection and sent her home. After 10 days of antibiotics and no improvement, we were given another round of medication and an appointment with Dr. Rivera, a pediatric gastroenterologist. He performed colon- and endoscopies and we were given a diagnosis of Crohn's Colitis.We started therapy. A restricted diet, fish oil and probiotic supplements, multiple hospitalizations for IV steroids and bowel rest, 5 ASA drugs, steroids, steroid enemas, multiple antibiotics, Remicade infusions, enteral (liquid) nutrition through an ng tube, Humira shots, Simponi shots, chiropractic adjustments. At one point she was taking 16 medications and supplements daily. All of these drugs cause some notable side effects, affecting Izzi's day to day life and potentially affecting her future. While there are some more drugs out there that we haven't tried, we have used the top of the line biologic therapies; I am told if these don’t work it is unlikely anything else will.We visited Dr. Essers at Childrens Hospital in Boston in July 2011 for a second opinion. He agreed with our treatment course.After another colonoscopy this spring Dr. Rivera told us that it was time to make an appointment with a surgeon to discuss removing her colon.We again visited Boston in May of 2012; this time with Dr. Zitomerski (GI), who again agreed with Dr. Rivera, and Dr. Linden, the surgeon. We put her on Tacrolimus as a "bridge" to surgery; to get her as healthy as possible, and an antibiotic, which helps avoid potentially fatal infections while on immunosuppressant therapy. She was scheduled for a permanent colectomy (colon removal) on August 31 in Boston. Izzi showed such positive improvement on her new medication that we decided to repeat her scope in August; she is showing significant improvement. Careful consideration has led us to the decision to postpone her surgery and continue tacrolimus therapy. 2014 brought us to Dr. Carey Qualia in Albany after we were reminded
that tacrolimus was a "bridge" therapy and not to be used long term. He
agreed with her course of treatment thus far. Shortly after
our visit a few symptoms began to creep back. We tried adding in an
extra drug, to no avail. She had colon- and endoscopies and we tried
another medication, this one a shot. In 2015 we visited another GI, this
one in Connecticut, at our GI's request. He suggested she quit all meds
except steroids for a month before starting another new one. After
quitting her meds, Izzi went from bad to worse. She was up every 1-2
hours every night to use the bathroom, and was on the floor in pain
multiple times a day. She couldn't make it through a day at school, and
was refusing to eat just in case the food should cause her pain. I
started massaging her nightly to help relax her, and her dad got her a
dog- I have heard that canine and equine therapy can do wonders for
stress/pain. She started a new infusion in June.
She initially claimed to feel great, but after a week, she came home
from school crying again. Wonderful friends loaned us a wheelchair so we
can do normal things like walk around the block, or walk to school. An excerpt from 2011:"I write all this because if I could end her pain, I would. I wish I could have the disease for her. I wish *I* was in the bathroom all day, instead of my spirited, willful, loving 5 year old that is so proud that she no longer cries each time she needs another IV or more bloodwork. I wish *I* was the one that had to take “that yucky medicine” twice a day, instead of my sweet, innocent girl. She is incredible and amazing, and if I could find a way to make her disease easier for her to manage, I would."In 2012:"I am incredibly grateful that she is doing SO WELL right now (She is ALMOST asymptomatic). I am appreciative that we have a doctor locally that will work with us, and lucky to be affiliated with one of the best pediatric gastroenterology centers in the country as well. Despite the fact that she is doing well now, there is always the fear in the back of my mind. I am hoping that her symptoms will stay away for just a bit longer, wishing that the side effects (the drug she is on now can cause lymphoma and kidney damage) don't happen to my daughter. So this year I write all of this because if I could end another parent's struggle, I would. If I could spare them the nights of torture researching treatments that "might" work, the times hoping against hope that *this* therapy will not fail when all others have. If one more parent didn't have to make a decision for their little one such as putting them through therapy that may cause infertility or put them through ileostomy surgery in hopes that it will lead to a "normal" life, I would do it in a heartbeat."